
Science & Story
Why I Write About Dysautonomia
I write about dysautonomia because of the way it has upended my life. I write because I look OK to everyone else, but I can’t do what someone who looks like me is supposed to be able to. Work is so hard. A day is a long, hard slog. What else? My dog is underwalked, my musicianship is deteriorating, I can’t go on a hike, I can’t work in my garden in the summer for the heat.
Let’s face it: things suck. And before you go thinking “Well, at least….”, remember that that is the absolute worst thing you can say to anyone (except, perhaps, “I’m glad things suck for you, and I hope they get worse”). That kind of thing reduces the permission for unhappiness and suffering to only the worst-off person in the world.
And another thing: That which doesn’t kill you often leaves you wounded and broken by the side of the road. (You can use the old bromide that it makes you stronger if you are talking about your dinner. Generally, food that doesn’t kill does make you stronger, or better nourished at least. Unless you’re overeating the wrong things to the point where your arteries clog or you can’t get around anymore. In that case, no, food is just gumming up the works, as well as your arteries. This is already too complicated. Just don’t use the saying. It belongs on motivational posters, which means it belongs in the trash. )
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I write about dysautonomia in the hope that one day I will feel better.
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